This blog lets you keep up with the W family. Our three boys are John who is 18, a high school grad and off to college, Noah who is 15 going on 21 and loves sports and little Ben, who is the sweetest little 8 year old, who happens to have Down syndrome(unless he accidently ate some gluten, then he turns into Mr. Hyde.)

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Thursday, March 21, 2013

Ben's Birthday was especially fun this year since he now really understands what is going on so much better. The day before his big day I told him "Tomorrow is
your Birthday". His reply was "Yeah, Birthday Cake." He was super
excited to enjoy his favorite supper, sketti and BALLS!

This was the first year that he knew he was supposed to blow out the candle and kept trying to do so while we were singing.

He needed no direction when it came to opening presents either. He just preferred to take the paper off, small piece by small piece, which drove his big brothers insane!

Not sure what his favorite gift has been so far, as he seems to be enjoying his tools, play dough, play food, balloon and basketball hoop equally. So many new toys. so little time!

Wednesday, March 20, 2013

March
21st, is World Down Syndrome Day. This day was selected because Down
syndrome or Trisomy 21 happens when there are 3 copies of the 21st
chromosome. To celebrate and to help raise awareness please wear socks…BUT
NOT JUST ANY SOCKS…brightly colored socks, mismatched socks, long
socks, printed socks, 1 sock…maybe even 3 socks (or EXTRA socks) for 3
chromosomes. Just so long as they are socks which are on display and
people will ask you about. Take that moment to let someone else know about the special person in your life that has Down syndrome. Have Fun!

For more information visit http://www.worlddownsyndromeday.org/lots-of-socks

5 years ago today, I was awakened about 4:30 in the morning by something that felt like a balloon pooping.

It was my water breaking.

I was very thankful that it happened at home, and not at work, since I was not planning to see my new little guy for a few weeks. Even though I had already given birth to two babies already, I was not sure what to do. Ben was scheduled to be born on April 6 via c-section, just like both of his big brothers (thanks to John for being breech). I had never been "in labor" before or even felt a real contraction, so it was all new to me.

I called the Doctor on call since I knew they would have to move up the c-section and he told me to go to the hospital to get checked out. They had to verify that my water really broke. Apparently some women have false alarms on that, but I don't know how. When your water breaks, it is pretty apparent.

They verified that Ben was ready to be born so they started to move the schedule around to get the surgical team assembled. Since we had a prenatal diagnosis of Down syndrome,with a VSD they wanted to be ready to check out his heart once he arrived.

A student and teacher showed up to put in my epidural. I was not very happy about that, but I realize that students eventually need to practice on real people to learn. They put in the first shot to numb the area, and she told me I was going to feel a little bee sting. That was no bee sting, it was more like a snake bite, and I let her know that. After at least one unsuccessful attempt to insert the epidural, I heard someone say "snake bite", as they went to try again, but by now my back was numb. Quite frankly, I am glad I can still walk after that episode since it took 3 tries to get it in. Hopefully the student learned what not to do next time.

Finally the Doctors showed up and it was time to meet Ben. I tend to have a very hard time during c-sections with nausea and even after the anti nausea medicine I was starting to feel poorly. the Anesthesiologist tipped the table so I was laying slightly on my left side and it was like magic. The nausea went away.

They brought Ben to me and I saw his sweet little round face and did see his Down syndrome right away, but it did not stop me from instantly loving him. It took him a while to cry, but they told me he was fine. They wrapped him up, and took us all directly to a room where a tech checked out his heart. That was the hardest part, watching my sweet new baby screaming while they dug on his chest with the wand. I just wanted to snuggle him and let him know everything was OK.

As it turned out everything was OK. and Grandma showed up with John and Noah, and just as he wanted, John was the first one to hold little Ben. Noah was second.

The boys got to take him down for a bath. They were excited to get to help.

The pictures show that Ben was not as excited about his bath as the boys were.

At that point we did not know what life with Ben would hold, and we were scared. Any diagnosis is scary, but when you look into that sweet face you know you will love this little bundle no matter what they can or can not do. For me, I think I took the bar for Ben, and laid it on the ground. I did not have any expectations, which is why every thing Ben did seemed like such a miracle. But soon the miracles were happening so fast, I realized we need to get the bar off the ground and start working with Ben to help him meet and shatter his goals. His progress has been amazing.

Here are some of the things I love about 5 year old Ben:
I love how you use your imagination to play with your toys. (Duck, Duck, Goose)
I love how much you like to read and how you read things wherever we go.
I love how I have to kiss your owies in just the right spot, or you make be do it over until I get it right.
I love how much you love Signing Time and signing when we just can't figure out what you want.
I love how much you love sports.
I love how much you enjoy school.
I love how you "referee" basketball games.
I love how well you listen to your teachers.
I love how much you love music and how you ask for "Ice, Ice Baby" every time we get in the van.
I love how you sing at church as loud as you can when you know the song.
I lover you sense of humor.
I love your laugh.
I love how you like to snuggle
I love how you like tickles.
I love how you love babies.
I love listening to you sing.
I love watching your do the Months of the Year Macarena.
I love your mad Temple Run skills.
I love how well you use your iPad for learning (and fun)
I love how you love "sketti and BALLS".
I love how you say please and thank you.
I love how you want to do things yourself and you keep trying to you get things figured out.
I love you for being just who you are.

Thursday, March 14, 2013

Have you ever heard of Barefoot Books? Less than 6 months ago, I had not, but now I am totally in love with the amazing illustrations and global messages of these beautiful books. These books are great for visual learners like Ben. He loves reading and singing and signing along with these books.
If you are familiar with Barefoot Books or even if you are not, you can earn a free $15 web voucher, just for taking this quick survey. If you have never seen them before, please take a quick look around the new website first to get an idea about what living Barefoot is all about, then come back and take the survey to earn your free voucher. It is quick and easy.

Wednesday, March 13, 2013

Ben's creative play has exploded in the last year. He can find a game in about anything all by himself. I love how he tries to engage others when he comes up with something he really likes. Here are some examples. A ball of yarn and bowling pin were a baseball and bat. His refrigerator alphabet letters became friends when he played a games of red rover on his toy chest.

Then the other day he wanted his flash cards down. I asked him "are you going to make a mess with them"? He answered "YES"! At least he is honest. I asked "are you going to help pick him up when you are done"? His reply was the cute little thing he does when ever I give him a choice between two things. He says "Hmmm" and taps his chin like he is thinking. I guess clean up or not clean up is technically a choice. When he decided he shook his head "no" and ran off with the cards.
A few minutes later I found this:

Ben was reading his word cards, then laying them out in a circle.

Then he got up and started touching each card saying "duh" (Duck)

Duck, Duck Duck

Then "Duce" (goose)

and he would grab a card and take off.

Around the circle

Being chased by an invisible classmate.

Until he gets safely back home.

It was so cute. Then he would take a moments to scold a few of his classmates (by name) and tell them to be quiet or to sit back down. His game went on for at least a half hour. He is such a little copy cat. At one point he folded his arms and sighed loudly. Not sure which teacher does that, but I am sure he has her reaction down perfectly. It was such fun to watch.

I can't wait to see what you come up with next week big guy!

Even at his fundraiser this weekend, it just took a couple kids sitting on the floor next to each other and Ben going up to them and touching each on the head saying Duck, Duck, Goose for a game to break out. The 5th graders were more than happy to join in, and then take over the game. The Jr High kids were not that adventurous and just watched the kids run around them. It was still neat to see Ben initiate this activity and for all the kids to enthusiastically join in.

Thanks to everyone who came out and bought, DSAF awareness items, Barefoot Books, Signing Time product or my crafts. A special thank you to the Cass County Creative Cats 4-H club for bringing cookies, helping to entertain the shoppers, shopping, and for helping to clean up afterwards! We really appreciated everything that was done to help out this great cause!

Wednesday, March 6, 2013

Today is the 5th annual Spread the Word to End the Word Day. I have often struggled to find the right words to describe why using the R-word is wrong, when others argue that they are using the slang version of the word and would never use it to describe Ben.
Today I took a quiz posted today by Ellen at Love that Max and it does such a great job of explaining why using the R-word is wrong in all situations, that I wanted to share it with all of you. Please take the quiz and let me know if you still think it is OK to use the R-word. And if you don't think it is OK, go tohttp://www.r-word.org/Pledge.aspx and take the pledge.

Monday, March 4, 2013

This past Christmas we became a mixed household. Mixed that is, in terms of having both Apple and non Apple hand held devices or tablets being used by members of my family.
I had often said that after collecting close to 1,000 apps (thanks to sites like Freeappalert, Moms with Apps and Technology in Special Education ) our family was stuck being a Apple family from here on out.
However, after owning the iPad for a whole year, I realized the only things I was using it for was to read books, check email and facebook, listen to music and surf the web. Since all five members seemed to be competing to get a little iPad time, I thought it would be a nice Christmas gift to add another device to our household.

After doing a little research I decided to purchase a Kindle Fire to give to my husband, since he getting the short end of the stick when it came to iPad time. I went with the Kindle Fire, because it was less expensive, smaller and more portable, and it looked like it could do all the things that we needed.

He was surprised and I think a little excited about it. It took a bit of time to set it up but once we did, it was working OK. The first thing we noticed about it, was that it was a little bit slower than the iPad. Not a big deal if you never had an iPad, but harder to deal with when you were used to speed.

The second let down was that one of our family's favorite games is not available for this device. It is a game that could be played on Facebook, but most of the browsers would not support the game and Kindle Fires don't have flash. Fortunately Randy was able to search and try out lots of different browsers to find out which ones would work to allow him to play his favorite game. Unfortunately the game is still pretty slow, and it is hard to get a good score then things are running slowly.

The Kindle Fire works great for reading and music. Browsing is OK, and it has Temple Run so as far as Ben is concerned, it works just fine! There are some educational apps available, but the variety and quality of Apps in Amazon don't even come close to those available through iTunes.

Ben showing Noah's basketball team his sweet Temple Run skills.(iPad)

So if you have never used a tablet and price is an issue, the Kindle Fire can be a great alternative, because you probably won't be bothered by the speed or know what you are missing when you see all the great apps that are available for the Kindle Fire. But if price is not a limitation, I would recommend the iPad (2, 3, or Mini) hands down. The speed and number of apps that are specifically made for individuals with special needs are worth the extra money, in my mind. Size is another issue. We only got the 16 GB and I really wished I had gotten one with more space. I am constantly having to delete apps off our iPad due to space constrictions, and that does get to be a pain (especially when I delete one off and then need it the very next day and have to put it back on). I did spend the extra money to get a bigger Kindle Fire, and it has worked out great. So consider spending a little extra for a 32 or 64gb, if you can.

Finally, the one thing I recommend everyone do when buying a tablet or hand held device, no matter the kind, is to get a good sturdy case. We are on our second Griffin Survivor case and I know the case has saved the iPad on many occasions. It looks like this:

If you are still not convinced that a case is necessary, here is a story that might convince you. Noah bought an iPod Touch with his Christmas money. I told him not to take it out of the house until he had a case to protect it. Since he spent all he had on the iPod, he had to earn more money and ordered a case on-line. However, like most 10 year olds who have a really cool electronic device, he decided that listening to his Mom was optional. He took his iPod on a trip to town and left it in the truck one snowy day. He and his older brother went out to get it, and a snowball fight occurred on the way back from the truck. In an effort to get away, after squarely landing a perfect snowball to the face of his older and much bigger brother, Noah took off running and dropped his unprotected iPod Touch in the snow. He knew it fell out, but did not stop to pick it up. However when you don't stop right away, it is harder to find a white iPod in the snow, and when John and Noah had made up and were forced persuaded to go out and search for it, it got stepped on and the screen cracked. The best part is that the case he ordered, showed up in the mail the next day. Hopefully Noah learned an important lesson from the whole situation, but the kid is still the luckiest person I know. After a couple days in rice, and being put in the case, the iPod works fine. I think it's overall life expectancy has been severely diminished, but for now, it is still going strong. So regardless of which device you get, a protective case is a great idea.

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ABC Signing Kids

ABC Barefoot Kids

About Me

I live in on a farm in South East Nebraska, teach sign language to young children, am a Barefoot Book Ambassador, and help out at school, church, and fund raise for the LuMind Foundation for Down Syndrome Research. In my spare time, I love to make beautiful things with yarn, beads and cameras.